Hello, March.

Kerissa • March 3, 2016

Wow, it’s been a whole month since I last posted here. Did you miss me?

February was very rough, and I’m glad I can now look back on it.

Here are all the latest appointment updates. Beware, this is super long!! If seeing doctors was my full time job, I’d be rich. For those on facebook who already read my “mito” update, just scroll down to pass that one.

Mitochondrial medicine (posted Feb. 16th):

1. My hypomagnesemia is related to the mitochondrial disease—a lot of his patients deal with the same thing and need daily IV fluids with magnesium just like me. Still going to be seeing nephrology at OHSU on the 29th.
2. He wants my doctors to aggressively treat the Wilson’s Disease and start me on another chelating drug in addition to the Zinc Acetate I’m taking. Unfortunately, there have been no studies showing that WD causes a mitochondrial depletion (which was found on my muscle biopsy). This means treating WD probably won’t help improve the mitochondrial symptoms, but he’s still interested in how treatment goes!
3. He is going to ask the lab to check my whole exome sequencing analysis (done last year) for Wilson’s Disease gene abnormalities.
4. I will be starting Alpha Lipoic Acid in addition to my other mitochondrial co-factors and antioxidants.
5. He thinks that in the next 2-3 years, I’ll be eligible for a drug trial. So far, one that he’s involved with looks promising.
6. I’m dealing with another painful jejunostomy feeding tube infection… Thankfully I didn’t have to go to the ER here! He was able to prescribe antibiotics for me, but he said I need to follow-up with my GI surgeon right when I get back!
7. One more thing, he said he won’t forget me and that I’m very memorable!

GI Surgery :

I followed up with my GI surgery team the day after I got back from San Diego. To my surprise, I had to have a small unexpected surgery called “incision and drainage” at the site of my j-tube infection. It was very painful, and for several days after that, I had to pack the wound with gauze twice a day. The resident cultured the abscess, and we received results the same day I was in Seattle on the 22nd to see my pain dr. My cultures grew a bacteria called Enterobacter Colacae Complex, so I was switched to a different antibiotic. I was on antibiotics for a total of 11 days. Thankfully, the infection is now gone, but my j-tube site is raw and super painful due to bile leakage. This has been a problem since November, so my GI surgeon referred me to Wound and Ostomy Care. Haven’t seen them yet, but hopefully soon..

Neuro-Ophthalmology :

The ophthalmoplegia (eye muscle paralysis) in my left eye is stable which is good news. The vision in my right eye is continually getting weaker, though. My right eye is either working too hard because my left eye doesn’t move well, or this is due to the copper accumulation from Wilson’s Disease..

Pain Medicine :

It was soo good to see my pain dr. at the UW Medical Center on Feb. 22nd. He gave me a big, long hug! For those who don’t know, he’s my favorite doctor out of all. He spent over an hour and a half with me. From the appointment and neuro exam, he came to the conclusion that I’m currently not dealing with Complex Regional Pain Syndrome. He thinks I have Small Fiber Polyneuropathy which is very similar to CRPS but also indicates nerve damage. The plan is to try and switch to a different and new medication….similar to the one I’m on, but he’s seen better results. I’ll also be getting another bilateral lumbar sympathetic block, but it will be done here at OHSU. We talked about Spinal Cord Stimulation, and sadly, he doesn’t want to put one in yet because my health isn’t stable, I’m on IV nutrition, and I just got over an infection…all big risks. If I were to get an infection in my spinal cord from the surgery, he would never be able to forgive himself. I trust him completely and understand, but I AM disappointed….hopefully things look up and I can get one down the road!

Gastroenterology:

I had a GI follow-up after we got back from Seattle, and my dr. ordered lots of blood work to be done to check on all my vitamin levels and minerals since I’m on TPN. We should get results on Friday.

Hepatology:

My GI dr. spoke with my hepatologist a couple weeks ago. He said that my hepatologist will be calling sometime soon to tell me that he wants to repeat some Wilson’s Disease tests. He wants to see how the Zinc therapy is going and if it’s helping remove copper from my body.

Nephrology:

I saw my nephrologist for the first time this past Monday, and she is amazing! So blessed to have her on the team. She ordered lots of lab tests to be done tomorrow to try and get to the bottom of why I’m dealing with Hypomagnesemia. I really want to cut back on my IV fluids with magnesium, but that’s going to be hard to do if my level keeps dropping. Hopefully these tests give us some answers. She’s looking into 2 kidney disorders, and I pray I don’t have either. I don’t think I can take another diagnosis!!

Pulmonology:

Today I saw my pulmonologist for the first time to assess my weak respiratory muscles. I had another pulmonary function test, and we compared the results with the one done at Cincinnati Children’s. It wasn’t good news. One of my values showing lung strength decreased from 72 to 46. That’s a big decrease, and this level is seen in chronic respiratory failure. So I have to get another PFT done in 6 months to keep an eye on this. Taking it one day at a time, and I know I’m in the Lord’s hands. Here is something good—all my other pulmonary tests (including chest x-ray) are normal.

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J-tube update and a prayer request for my uncle ❤️

By Kerissa Lee • April 16, 2026

Hi, friends, I just wanted to write an update on what’s happened since my last post. Sadly, the 2 different tube changes haven’t helped, and there’s still so much leaking around the tube. 🙁 The abdominal pain was decreasing each day, but for some reason, it has ramped up again and has been steadily getting worse the last several days. The pain is sharp and throbbing—it also hurts to use my abdominal muscles. I saw my primary care dr. this past Friday, and he ordered an urgent CT scan. I had that done this past Monday, and the scan shows that the balloon on the tube is lodged in my abdominal wall (it’s called buried bumper syndrome). 😥 So painful, but I’m thankful for answers! I actually had this issue many years ago, and usually, changing the tube size helps. But we’ve already tried 2 different tube sizes in March which hasn’t helped. I don’t know if the tract got damaged or what.. My PCP messaged the surgery team twice now, but they’re not responding still. Ever since my general surgeon left OHSU 2ish years ago to practice in New Orleans, it hasn’t been a good transfer to a different team. 😢 In addition, the CT scan also revealed that I have ground glass opacities in my left lung, so I have to go through work-up for that as well to figure out the cause.. Aside from these latest issues, I’m praising God that my mitochondrial disease has been stable still!! So thankful for God’s grace and faithfulness. The day I got my CT results, I read this excerpt below from one of Joni Eareckson Tada’s daily devotionals, and it was like the Lord was speaking right to my heart. I hope it’s an encouragement to you. ❤️ “Present pain and afflictions tend to heighten future joy. When is peace the sweetest? Right after the conflict. When does a cold drink taste best? When you’ve become very thirsty. When do you appreciate rest the most? After hours of hard labor. When is joyful company most pleasant? After enduring long days of loneliness. The truth is, our recollection of past sufferings may one day enhance the bliss of heaven. Eternity with the Lord will be so much more heavenly to those of us whose faith has been tested, battered, and tried, time and again.” -Joni Eareckson Tada One more thing.. I’d really love prayers for my uncle (my dad’s older brother). He’s been very sick in the neuro ICU with serious issues. First pneumonia, then bacteria in his spine which later broke his back. He had a major spinal surgery but still can’t move his legs. 🥺 On top of that, his kidneys started failing, so he had to be placed on continuous dialysis. He also had to be put on a ventilator due to fluid in his lungs. Then, he still couldn’t breathe well, so he had to get a tracheostomy tube placed in his neck. 🥺 Despite all this, he and his family are so strong and trusting the Lord which is a huge testimony to all of us and to the ICU. Could you please pray for peace, strength, and healing over his body? I know he and his family would be so grateful for your prayers. 💙 P.S. I wish I could show you my foster nephew’s sweet face in this photo from Easter Sunday! He is now 9 months old—the most precious and adorable little boy!! Our lives are so much sweeter with him in it. 🥹

Letter to my GI specialist 💚

By Kerissa Lee • March 31, 2026

Dear Dr. Phillips, There aren’t enough words to express how thankful I am to have had such an amazing GI doctor like you these past 13 years. I think of all the hard challenges that have happened starting at age 20 and beyond: experiencing GI dysmotility, not being able to eat “normal” foods without terrible abdominal pain/distention, only tolerating soft consistencies like baby food pouches (which was not fun as a 22 year old!), needing an NJ tube placed down my nose, having a jejunostomy tube surgically placed, then no longer tolerating tube feeds, dropping down to 77 pounds, getting admitted the day after Christmas to start TPN, being surprised by the extremely high copper levels on my liver biopsy and starting treatment for that, going through septic shock which caused ischemic hepatitis (remember when my liver function test was 1674!), having sepsis 5 other times from multiple central lines and ports, requiring urgent surgery to remove my gallbladder, needing D10 added to my IV fluids for numerous mitochondrial crashes, and much more. Through all the highs and lows, you were there for me, and I truly feel like I hit the “doctor jackpot” to have had a GI specialist as caring, compassionate, knowledgeable, and kind as you. I shed quite a few tears to my chagrin at my last in-person appointment with you in February 2026, and I still do as I reminisce and write this letter. But, they aren’t just tears of sadness. They are also tears of gratitude—I know this journey would have been much more difficult if I didn’t have your wonderful care and support all these years. I’m so happy that I was able to get off of TPN back then after 5 years of being on it. Not only that, but I’m so thankful that I can eat orally to my heart’s content without pain and abdominal distention. I know that’s in part due to you, so thank you. From the bottom of my heart, thank you so very much for caring for me. I will never forget you, and I wish you all the best as you start your retirement. :’) With immense gratitude, Kerissa

J-tube update

By Kerissa Lee • March 17, 2026

"God is always doing more than we know, working toward a good we will one day rejoice in." -Lysa Terkeurst